Wednesday, August 22, 2018
In my previous post I shared the original letter that I sent out to local and state government officials. On the list of people I sent it to was Governor Snyder, and yesterday I received the following email response from his office:
Dear Ms. Adams-Fall,
On behalf of Governor Rick Snyder, I am responding to your recent email where you outlined your concerns with regards to PFAS and Parchment’s municipal water system. As the Director of the Michigan PFAS Action Response Team (MPART) I am committed to ensuring that residents in Parchment and the surrounding communities are provided timely information along with available resources to address questions.
In 2017, Governor Snyder created the Michigan PFAS Action Response Team (MPART), the nation’s first gubernatorial appointed multiagency action team charged with leading a cohesive and comprehensive response and recovery to PFAS contamination statewide. Due to proactive investigatory efforts, to date, MPART has identified 34 geographically dispersed sites in Michigan with known PFAS contamination. Additionally, MPART is undertaking a first of its kind statewide testing of every community water system regardless of size. This was how we discovered PFAS in the drinking water system in Parchment. This effort was funded by the legislature at the Governor’s request. As you are aware, when contamination was discovered, the state administration, in partnership with local government, acted immediately to protect public health.
The scientific community has indicated that exposure to high levels of PFAS may pose a significant public health risk to vulnerable populations, including infants and pregnant women, and to those with long-term exposure. As medical research regarding the health implications of this suite of chemicals continues to evolve, it is apparent that exposure to elevated PFAS levels should be avoided. With regards to having your blood tested, it is my understanding that you have received an appointment with your primary care physician to move this process forward. Further, the Chief Medical Officer from the state contacted the Health Officer from Kalamazoo County, Dr. Nettleton, and he indicated he would contact you directly to answer your questions.
In answer to other questions you posed in your email:
- In response to your request to have regularly scheduled town halls we do have reoccurring town halls in any area of the state that has had significant finding of PFAS contamination.
- Regarding a community or state-wide blood test for individuals we recommend a discussion with a personal health provider to understand the association between a blood level for PFAS and any potential health issues. These private and focused discussions will allow each individual situation to be professionally assessed. Regarding larger studies for a community exposed to elevated levels of PFAS, we have had discussions of exposure monitoring for populations within Michigan. Such studies require formation of a research plan. We have actively promoted such studies with the federal government and continue to access the potential for biomonitoring and research studies in Michigan.
- In answer to your question about compensation for loss, we are currently doing an investigation concerning the source of the contamination. When the source of contamination has been determined a discussion will occur with the responsible party. Our first focus will be mitigating people’s exposure to elevated amounts of PFAS and then establishing long term remediation of the contamination.
- With regards to the personal financial loss that you experienced with the produce in your garden, the state does have programs for those that qualify to support families with fresh fruits and vegetables. Local programs such as Double-Up Food Bucks (866-586-2796) and Kalamazoo Loaves and Fishes Mobile Food Initiative (269-488-2617) are available to residents in your area.
The PFAS challenges in Michigan are important and the Governor, MPART, and hundreds of state and municipal employees are working diligently to address this statewide issue. As residents of Michigan, we are all committed to supporting the residents of Parchment as well as other impacted communities throughout state. You may find additional information on the state’s response to PFAS, please go to: https://www.michigan.gov/
Director, Michigan PFAS Action Response Team
I honestly was appalled by this response, and felt that it was completely lacking in any sort of relevant information. I sent the following email response within an hour of receiving their email:
Dear Mrs. Isaacs,
I appreciate you taking the time to communicate with me regarding the letter I sent to the office of the Governor two weeks ago, thank you. However, I am quite surprised by some of your responses. You start buy telling me that you are committed to providing me with timely information and resources, but this email has taken two weeks to occur as a response to my initial letter. In that time frame I have received varied responses from the Kalamazoo Health Department, Parchment City Commission, and DEQ. Also, through a significant amount of digging on my part, I was able to have it confirmed that I have been given a significant amount of misinformation from each of those departments as well. I do not believe at this point that either the citizens of Parchment at large, or myself have received timely information, or adequate resources to address our wide range of concerns.
It is my understanding at this time, and please correct me if I am wrong, that the state of Michigan has been aware of potential PFAS issues since 2012, and did not start testing our water for them until the start of this summer. I would not call a span of six years an immediate response. While I am glad to hear that MPART has been formed, I have yet to be impressed with their response to the needs of people in my community, or other communities in Michigan dealing with PFAS contamination.
Currently, we have had ONE town hall meeting about the water issue here in Parchment, and that was three weeks ago. I have continuously asked when the next one will be scheduled, and the repeated answers are 'I don't know' 'Not yet' and 'When we have more information', and quite frankly, I expect a better answer. I would like to see a meeting happen as soon as possible, with several more scheduled into the near future. The people of Parchment have a right to an open public forum with government and health officials regardless of whether or not more information has been received yet.
Regarding a blood test, I have already discussed the option for a test with both my General Practitioner, and Doctor of Osteopathy, both of whom were willing to order the blood test for me, but unable to do so as it it is currently not available in the State of Michigan. I have also had multiple discussions directly with William Nettleton. I am not confused at all regarding what the blood test will show, and what it can and cannot be used for. I understand that it will not help diagnose or treat current, past or future illnesses. I believe that ever single person who has been exposed to unsafe levels of PFAS in their water has the right to a blood test provided to them by the state of Michigan, and I will continue to work towards seeing that happen.
Your response to my query about the loss of my garden, is quite frankly, extremely offensive to me. Loaves and fishes is a food bank. Double up food bucks is an initiative of the food stamp program in Michigan, they are programs put in place to assist people in times of extreme economic hardship. They are in no way related to the PFAS crisis in Parchment, and should not ever be held accountable for restitution purposes. I am not eligible for the programs you are suggesting, they would be incapable of replacing the yield of the over 200 food bearing plants in my garden, or the HUNDREDS of jars of home preserves I have made, and it would be absolutely ridiculous to even consider using those programs as a solution to this problem.
If I sound frustrated, it's because I am. I have spent weeks seeking answers and results, and seen none. Your responses to my questions sound like a campaign pitch, a form letter, and completely out of touch with the reality of living in a community where we have been told we are poisoned and then given no further information for weeks on end. You have offered me no real solutions in this letter, just more jargon and another brush off; and I am extremely disappointed that when I finally heard from you, this was your response. Please try to remember that the citizens of Parchment and other affected communities are real, life human beings, and that we are your constituents. We elect our officials in the hopes that they will care about our needs and do what is necessary to ensure our health and safety. I appreciate all of the efforts that are being made to insure the forthcoming delivery of clean water to Parchment residents, and sincerely hope that I will see the other surrounding health and environmental issues be addressed and dealt with also.
Thank you for your time, I hope to receive further information and correspondence from your office moving forward.
Tuesday, August 7, 2018
To anyone who is curious, below is a copy of the letter I sent this morning to local government and health officials in an attempt to draw attention to major issues related to the Parchment Water Crisis that I believe are not being sufficiently addressed. I am aware that it is rather long and wordy, however, I think it was important to cover the full breadth of my concerns at this time. I'm not sure if I sent it to enough people/the right people, but I'm doing my best to try to learn how to advocate for myself and possibly fellow Parchment citizens in this sort of scenario. In light of what I consider poor responses from the local government, I will also consider contacting news sources to try to help draw attention to these issues. If you know of anyone who is a Parchment resident, or was exposed to the water, who shares my views, please put me in contact with them so that we can work together as a community to ensure that our concerns are addressed!
My name is Amber Adams-Fall, and I live in Parchment Michigan. My husband and I purchased our home on Groveland Avenue in January of 2011, and we and our pets have been drinking Parchment city water in our household for seven years. Prior to 2011, My husbands family moved to Parchment in 1989 and received city water to their home on Orient for his entire childhood and adolescence, until present day when they relocated to Battle Creek in October of 2017. For 28 years my husbands immediate family consumed Parchment City water on a daily basis. I am writing you to address my concerns regarding the Parchment water, since my written questions were not addressed during the town hall meeting last Tuesday evening, I was not offered a form for verbal questions, and after numerous attempts on my part in the past week to open lines of communication, I do not feel that I have been able to have my concerns adequately addressed.
We were told in the town hall meeting that we would be able to contact our General Practitioner or local doctor to order a blood test that would determine whether or not the PFAS chemicals are present in our blood stream. It was clearly explained that the test results would not be relevant in terms of diagnosing previous or current illness, or determining courses of treatment for existing illnesses. The results would ONLY be relevant in terms of stating the presence of the chemicals in a persons blood stream. It has been clearly stated the the levels of PFAS in our municipal water are over 200 times the 'lifetime health advisory' and in stating that, the implication is that the toxins are harmful to health when consumed by a human. Since studies of the effects of these toxins on human health are minimal (health officials only noted ONE clinical study, the C8 study), but have shown several possible extreme health effects, I believe there is enough evidence to suggest that Parchment residents may see negative health effects due to consuming toxic water. I believe that ANYONE who has been exposed to the Parchment City water that showed unsafe levels of PFAS chemicals should have easy access to the blood test that would find those chemicals in their body.
I have now spent six days attempting to have my blood tested for PFAS, and have been unable to gain access to that service. On Wednesday, August first I saw my DO at Galesburg Family Practice, and requested that she order the test, which she did not do as she believed it was not relevant to the treatment I was seeking at that appointment. The following day, Thursday, August 2nd, I contacted my GP in Royal Oak, MI, and requested that she order the test. She looked into it and returned my call stating that the Beaumont Health System which she is a part of does not offer it, and she cannot order blood work outside of her hospital network. I called my DO in Galesburg again on Friday, insisting that the blood test be ordered for me as soon as possible, and when I heard back this morning, Monday, August 5th, I was informed that none of the labs associated with my Doctor were providing that test, but that the Kalamazoo Health Department was offering it, and I could receive it through them.
When I called the health department today, I believed that I was calling to schedule the test, and was shocked to find that when the operator had offered to transfer my call, it was not to a lab, but rather to the Parchment water hotline. I was then informed by the hotline operator that the blood test is NOT being offered by the health department, and will not be offered under any circumstances unless it becomes mandated by the state. He then told me my only option would be to have my GP or DO order the test, or independently call individual labs myself to try to find someone offering it. (In effect this is what I have already done, and been unable to get results)
It is absolutely unacceptable that this blood test is not available to any and all citizens affected by the water. You have admitted it is harmful to health. You have admitted that you do not have adequate information about the health effects. I believe it is the legal right and human right of every citizen of Parchment to have access to medical proof of the presence of toxins in our blood in order to protect ourselves in the event of further studies yielding more findings of physical damage. While I believe that these tests should be made available free of cost, I am prepared to pay for my test out of pocket, if necessary, and will expect a response within the week about where and when the blood test will be available to myself and any other Parchment resident who wishes to have one as well.
The next issue that needs to be addressed is a public health study of the effects of PFAS on Parchment residents. The only reason we have any information at all about human health effects of these toxins are because of the information gathered in other communities that experienced similar poisoning. I believe we would be making a grave mistake to not collect information from as many Parchment water consumers as possible to try to study the long range effects the water may have had on our residents. I believe our community health officials and leaders need to show an active interest and concern towards collecting data and providing any necessary care related to this issue. (This is also relevant to soil tests that would help determine whether or not it is safe to grow food producing plants in coming years)
The third issue I would like to address is one of personal loss directly related to toxic water in my household. A large portion of my household grocery bills are augmented by produce grown in my own yard. This spring I spent over $200 on seeds, compost, and plant starts for my garden, which I then spent countless hours tilling, planting, weeding, and watering. We have been informed that it is not safe to eat any produce from our yard that was watered using Parchment city water, which will result in a massive financial loss in my household. It affects not only the hundreds of food producing plants in my yard that are currently bearing fruit that I will have to throw away, but also the extra cost of watering in spring and summer gone to waste. Since anything that I preserved at home using Parchment water is also deemed unsafe, the over 150 jars of food I have canned over the course of the past year also represent significant financial damages and personal loss. I cannot imagine that I am the only household in Parchment experiencing additional losses of this nature on top of payments for water that poisoned our food and bodies. I believe that patrons of the Parchment City Water system are entitled to refunds or financial restitution.
While I understand that our local government and health officials are working hard to transition us to system that will provide us with clean drinking water, I believe it would be egregiously short sighted to ignore the numerous other long range physical and financial issues related to this crisis. You, our government, are here to represent us, the people, and I expect you to do exactly that. In summary, what I am asking for is this:
1) Regularly scheduled town hall meetings, or access to a public forum at which ALL residents have an opportunity to voice their concerns and receive answers from governmental and public health officials
2) Immediate access to a blood test for PFAS chemicals available within Kalamazoo County, to anyone who wishes to receive the test.
3) A public study or public health record of the possible health effects of PFAS on current or former residents and employees in our community; or a survey that would gather such information and compile it for public record.
4) Acknowledgement of the need for financial restitution to Parchment water customers, both for the water itself, and for personal damages associated with the use of toxic water.
While I understand that you may not have immediate responses for what I am asking, I will expect a response from you in regards to how you intend to address the issues I am putting forth today.
312 Groveland Ave, Parchment MI
Friday, July 20, 2018
Please try to bear with me and read through the end, if you will. It's been a long time since I have written anything of substance, and I fear that I will be somewhat long winded and rambly for this one.
In my early 20s I started to have severe regular migraines. They affected my vision, caused me to be physically ill, seemed immune to over the counter pain medications, and sometimes lasted for days at a time. I had good health insurance through my parents, and saw a GP, followed by several specialists. I visited a neurologist. I had ever possible test, and they found nothing wrong with me. The Neurologist prescribed me Imitrex, an RX migraine medication, which caused me even more severe nausea (not fun when you already have extreme pain) so I stopped taking the pills and looked for other options. I spent the better part of the following five years trying to learn homeopathic methods for relieving my pain. I had some success with modifying my diet, installed blackout curtains in my bedroom, put heat on the back of my neck and ice on my forehead, and soaked my hands and feet in scalding hot water to bring the blood down from my head. While some of those 'treatments' helped a little, none of them prevented the onset of the headaches.
When I first started dating my husband, and he enrolled in massage school, I had an incredible discovery that certain types of body work could eliminate a debilitating migraine almost completely. I found a new GP, went to the doctor, and told them I was pretty sure my migraines were being caused by excessive muscle tension in my neck; the doctor agreed and wrote me a prescription for physical therapy. At my intake appointment, my new PT called all of the other doctors into the room to examine me for secondary opinions. At 25, they told me I had the body of an 85 year old woman, that they had never seen a case like me, had no idea how it had happened, and that I was holding my head up entirely with superficial muscles, not the muscle groups that should have been engaging. I felt so embarrassed that I completely stopped talking to anyone other than Dustin about what was happening to me.
While I loved my physical therapist, the visits and workouts were awful. Everything hurt while I was doing it, hurt even worse after the appointment, and before I saw any over all improvement, my insurance ran out and I could no longer afford physical therapy. I tried to continue doing the at home workouts, but they cased so much additional pain and never resulted in any relief, that I eventually abandoned them completely, and tried to just focus on being as healthy and mobile as possible. I eventually left my 'day job' and for seven years did not see a doctor other than my gynecologist.
Please understand that while I think that the affordable care act was an incredible gesture, it did not provide as much as it should have or needed to to individuals without employment based healthcare. While we have always been insured, most years the insurance we can afford covers almost nothing (sometimes not even preventative care) and that specialized doctors and treatments are not even an option for us. For most of the past five years our monthly premium eats up all of our extra money so that we cant afford to pay for medical visits that would help us reach our deductable. (For those of you who have good insurance and don't know what I'm talking about, in most cases nothing is covered at ALL until the deductable has been met).
At this point you're probably wondering why I'm going on and on about headaches I had years ago, and how this is possibly relevant right now. Let me explain; I HATE asking for help, I do not like NEEDING help, I do not like showing any weakness, I can't stand being a burden to the people around me, and I will, and have, gone to incredible lengths to pretend I am fine when I'm not.
For the past two years, I have never NOT been in pain. I can't really pinpoint what started first, or specifically when, and I certainly don't know why. I've been hiding it, and lying about it, and trying to deny it for years. Last September I did an outdoor festival in Ferndale, and it was almost a hundred degrees. I had to do load in and load out by myself. I didn't get enough sleep, and I got too dehydrated. I was staying with my mom for the weekend, and ended up coming clean to her about what was happening when she found me on the bathroom floor throwing up because the pain in my arms, shoulders, knees, and feet was so bad. I couldn't get out of bed for four days after I came home from that show, and never fully recovered.
When I get out of bed int he morning, and stand, my feet hurt, my knees won't bend. It takes me twice as long as it should to climb stairs. Random muscles all over my body that you wouldn't normally notice twitch and spasm at random. My right shoulder has crippling pain and loss of mobility. My right knee make and the right side of my jaw make a terrifying spongy sound. I can't open my jaw all the way, and it feels like there's something rotting in my hip joints. If I'm lucky, I get one day a week without a headache, some days they're literally blinding. Some days I throw up from pain and can't drive, cant sew, can't read, can't look at my phone. I had to stop doing yoga because it was causing too much pain, tried pilates and it caused too much pain, reached the point months ago where a 20 minute walk would debilitate me for two days afterwards. Wearing shoes hurts my feet. Wearing a bra causes all of the muscles in my neck and shoulders to cramp, resulting in debilitating pain.
I am literally crippled, and have been hiding it from everyone I know for as long as humanly possible. The handful of people I told, I wasn't honest about the extent of the damage. I was afraid of being a burden to the people around me. I was afraid of acknowledging the reality of what I was going through. I was afraid everyone would think I was crazy, or that it was psychosomatic (It's not), and there was nothing I could do, because I couldn't afford to go to the doctor. It was a compounding problem that the worse the pain got, the less I could work, the less money I was making, and the farther I got from the option to seek the professional help that I desperately needed. I've been hiding in my house for the better part of a year avoiding social contact because I had passed the point where I could successfully hide what was happening to my body. I didn't show up for things I said I would go to because my pain levels were too high, or I couldn't put on normal clothes. I didn't visit my lifelong best friend after she had her first baby because my back hurt too much to drive comfortably and I was afraid I wouldn't be able to hold the baby for more than a few minutes at a time and she would know something was wrong. I didn't want to bother her or anyone else, so I stayed quiet.
When Anthony Bourdain died, I had a total emotional meltdown, partly because I loved him and was saddened by his passing, and partly because I watched as so many people I knew posted online about how shocked they were that someone who seemed totally fine could end their own life without anyone seeing warning signs. It was earth shattering to me to realize that I could draw a direct line between someone else who felt like they had no options and no way out, and myself. That if I continued to feel the way I have been, it could just as easily have been me making the choice to escape. I felt heartbroken, physically crippled, and trapped in my own broken body and mind. As I scrolled through my Facebook feed and watched all of the people saying 'Ask for help if you need it' 'you're never alone' 'I'm here for you if you need me' I couldn't think of a single person I felt like I could call. The week Bourdain died I actually wrote and deleted a post like this three or four times, but couldn't bring myself to go through with outing myself.
I feel totally comfortable saying that I've dealt with depression off and on for most of my life. I've lived through some traumatic events, terrible relationships, and used to experience really severe socially anxiety (though I think I mostly grew out of that one). I believe it's fairly normal to have at least some of those feelings, and I've never felt like I was in danger of doing any sort of harm to myself, or like I wouldn't eventually be able to navigate my way to a more even emotional keel. But how I feel right now is different. I've been feeling completely isolated. I can't wear the clothes that make me feel like the person I want to be, or make the art that I feel like expresses myself, or take the trips that feed my soul. I do not feel like myself at all. I feel physically incapacitated and emotionally crushed, and I've been struggling with these feelings long enough to be worried that I can't dig myself out of this hole on my own. I feel like many of the relationships in my life are dissolving, and I'm watching my business slip away because I can't do what I need to to hold things together. I've got the BIG SADS and I don't feel ok.
The first week of July I came home from a trip to visit my parents. Dustin went to work and I sat on the couch thinking about what I could do to help myself feel better. I was trying to work through whether or not I should make this post, and if I did, what I would say when my mom called me from the hospital. My dad had been admitted with a stomach ache, and left the hospital two days later with CT scan results that showed a tumor in his Pancreas. Ten days later he called me with the results of a biopsy and a diagnosis for stage 3 pancreatic cancer. The same cancer that killed his mother (my maternal grandmother) at the age of 53.
In the past month I've learned a lot of (pardon my 'French') really scary shit about pancreatic cancer. If you'd like, you can google it yourself, but I'll skip that here and leave you with the bottom line, which is that there aren't really 'survivors' of pancreatic cancer. Those of you who are lucky enough to know my dad, or have met him, know that he is THE BEST DAD EVER. He is a magnificent human specimen that survived being run over by a Buick as a child and pronounced dead. He survived Vietnam. He has spent half of my lifetime working out every day to stabilize and strengthen the muscles around the seven ruptured discs in his spine that the doctors told him would leave him paralyzed within 3 months, fifteen years ago. Half of the paintings and pictures in my parents house were painted or taken by my dad. He went on every single one of my childhood field trips with me. He bakes bread twice a week and has nearly 20 different types of berries and four high producing fig trees in his garden, and there is no one else on the planet like him.
On Monday, he will start chemo therapy, because the tumor is too large, and in the wrong place, and cannot be operated on without being decreased in size. In six weeks, if the chemo has not decreased the size of the tumor, the only option will likely be palliative care. I could tell you all of the numbers, the percentages, what the 'best case scenario' might be, but I won't. Even the best case scenario is too bleak to put here and have to look at in print.
After 9 months of waiting lists I saw my new GP one week ago to talk to her about chronic pain. She palpated my muscles and confirmed abnormal tension and atrophy. she manipulated my joints and confirmed abnormal grinding, damage, and lack of mobility. She did a series of blood tests and told me she couldn't help me, and that I needed to see a rheumatologist, which will not be covered by my insurance. The blood tests ruled out diabetes, thyroid issues, and rheumatoid arthritis, but showed insanely high levels of a chemical that is a marker for severe muscle damage. I've gotten far enough to have proof that this is not an imagined illness, but the rheumatologist can't see me until November. I don't know how to manage my pain, manage my business, and manage the soul crushing stress and depression I'm dealing with along with the possibility of losing my father far sooner that I ever would have been prepared for.
I don't know how to make this post be better written, because I don't know what to write. I don't know what to say, or what to do, or how to move forward. I don't know who to talk to, or how to ask for help, but here it is. For those of you that said 'you're never truly alone' I feel truly alone. For those of you that said 'if you're not ok, speak up' I'm not ok. I'm speaking up. I don't know what I need, or how to ask for it, so this is the closest I can get and the best I can do. If you love me, now is when I need you.